PMR, PREDNISONE, SPOUSES

I found that bit the hardest ...... I'm male. Its difficult for my wife. My daughter is working for me and also suffers because of me. Flowers are really just a very small token.

I'm down to 6mg/day pred and manageable. 10mg was difficult. Not having a clear picture of myself was like being detached, no reference point, floating. Not me. I also lacked concentration and short term memory terrible. Plus "pred brain" or "brain fog" limited complex problem solving.

It really isn't nice. But I took some solace from "at least I know something is happening to me". It meant I could do something about it. Imagine the effect on relationships for those who don't really recognise its happening.

I really only did three things.

One was talk about it with wife and daughter. Makes it easier to simply say "I feel like an unexploded ...." or "I'm getting overloaded ..." or "I need to stop.." and have them understand and accept. They are sensitive enough to not tell me how bad my behaviour was, and I didn't really want to know the details. I also talk freely about it with people I'm working with, and my neighbour. It makes a bit of space for me. Also discuss the second bit.

The second bit was learn to simply walk away when I was losing control. No time for explanation. Just walk away. Don't let it escalate. People understood the couple of times I've simply walked out of meetings I return when my disposition has improved.

Third was stress reduction. Don't do the things that aren't really necessary. Have others do things where possible. Organise life differently. Pace myself. Stop before it all goes belly up. I have more self control when not tired. If contemplating something stressful then back to talking about what may go wrong - then when it does go wrong laugh about it - "we knew this would happen ..." sort of humour.

All easier said than done (just talking about it was hard enough).

I wish you well.

I am also almost one year into PMR --- and the worst I had to endure just recently.  I thought it would never get that bad.  The fatigue and the burning back pain are tough to take.  I live alone, but I do take care of my granddaughter 3 days a week which helps me not to think about the pain too much.  I have steps in my townhouse and she helps carrying groceries and such.

  My friends know about the illness and  t r y  to understand that prednisone can only take away 70 % of the pain.  I will be on 20 mg for a month and reduce by 1 mg a month after that.  I have hamster cheeks, and don't walk well. 

Emotions are much stronger with prednisone........I got upset at my sister  when she called..... she told me that my "moon face" is due to eating too much which is not true.  Pfrednisone tends to distribute fat differently.  She told me this about 3 times before,  and I could not take it anymore because I told her that this is due to the prednisone.  She obviously does not want to listen .

If possible, let your husband read some of the responses you will get.  This is a great and caring website with fellow sufferers.  Take good care of yourself which is important, and get as much rest as possible.  All the best, Erika

I really empathise with you Kathy. I was diagnosed about 3 months ago, although this has been coming on for a long time. I have been with my partner for 2 years and he couldn't understand how much I had changed and the tiredness and lack of energy. In many ways diagnosis was a blessing as I had cancer before we met and I think he was worried that it was returning. It's hard in any relationship but difficult in such a new one. At first he didn't understand the implications of PMR and though after a few months of pills it would be cured. I even tried to make him leave me and find someone else who he could do all the things he enjoyed with. I felt very insecure. But I really didn't give him a chance. When he really got to grips with what PMR really is and why I was like I am he has been wonderful. My advice is to talk and not try to shut out those who are closest to you. The happy ending to this tale is that we are getting married on the 18th April. Good luck x

Kathy, stop beating yourself up. None of us can help having this condition or any of the additional side effects of the condition or the prednisolone that's used to help keep it in check.

i'm very lucky my husband is very good and most of my friends are. Pre diagnosis when I was in so much pain and I was so stiff I was a completely different person but as the pain gets more under control and the preds reduce you do see sparks of your former self returning. For me what is important is acceptance. It took well over a year post diagnosis to accept that I had this condition and that it and all the rest of its baggage was going to be with me for the long haul. I stopped waking up, going to bed, living each hour of the day scared and anxious, worrying about what the next day's new twinge or twang could be. Now I enjoy my life once again, obviously not quite like I used to as I still am unable to do many things, but I really enjoy my life again and thank god and the advancement in medical science that I am still alive and kicking! All the best, christina 

Hello Kathy, I feel very sad when reading these posts...have been and still am in your situation....it`s almost as if other human beings cannot accept others when they are sick....but it could happen to them!!...where is the passion from people these days. I have had PMR for 3 years, my husband dosen`t and never will understand it...but that`s tough....my sisters understand....for which I`m grateful, because they know the frustration I am going through, I`ve come to the conclusion, those that are very rarely ill are frightened by what they see, because it could happen as I said to them...distance yourself from negativity if you can....good luck, the sun s out!

Kathy,

All you have to do is have your mate or friends follow the discussions on this site for a day or two. The comments should give them some insight into how tired, uncomfortable/ painful and frustrated the sufferers of PMR are. It is not an enjoyable process. Give your hubby a hug, Let him know you appreciate him.

Charlie 44644

I have to ask - are you on enough pred? With a proper dose of pred many of us are NOT in massive amounts of pain - unless we are trying to do too much. There is no point taking pred unless you are on an adequate dose - you only have the downsides and none of the benefit. If you have localised pain which could be due to bursitis or myofascial pain syndrome try other approaches than just oral pred. Bursitis needs pred injections to be well dealt with. So does myofascial pain syndrome - but it also responds to manual therapies from a physio or massage therapist and also very well to Bowen therapy.

The northeast of England PMRGCAUK support group made a DVD a few years ago to explain to patients and their family and friends how PMR affects us - there are patients, doctors and physios on it explaining the implications of PMR and pred.

It is a certain fact you find who your real friends are!